Jacqui de la Rue is an endorsed health psychologist who is currently working at Cancer Council Queensland. Over her 28-year career, she has talked to dozens of families whose children have been diagnosed with cancer. This International Childhood Cancer Day, Jacqui walks us through how to approach childhood cancer conversations with sensitivity and respect.
1. Acknowledge their feelings are valid
“One of the first things I like to say is, it just feels wrong. It fundamentally feels wrong to learn that your child has cancer.
Parents feel helpless because they have to sit back and watch their child go through horrendous invasive treatments, they lose their hair, they are in hospital and they start to ask themselves, ‘Why did it happen to my child? Why wasn’t it me who got sick?’. I like to say, ‘It’s okay that you feel bad that it’s happening to your child and not you.’
And, if their child does pass away, it’s important for parents to know that they can feel that it is wrong for their child to die before them. It’s outside of what we think life should be about. My child should bury me, not the other way around. And that’s something that I come across with every parent, aunt, uncle, grandparent. It’s sad. It’s very sad. We should acknowledge that sadness is the right response to death.”
2. Don’t make them retell their story
“When a child passes away, everybody else says, ‘Oh my gosh I’m really sorry, how are you going? Do you need anything?’. While the people who say this may mean well, it can put parents in the position where they’re retelling their child’s story over and over again, which is traumatic.
I’ve worked with people who tell me they’re actually avoiding some situations, just so they don’t have to retell what has happened to her child.
I often help my clients prepare a letter, where they can write exactly what’s happened and what they need from their tribe right now. Having that letter just helps parents lower how many times they’ll be retraumatised by telling that story. It also puts some control back in that grieving parent’s hands, to say this is what I need, this is what I don’t need. And it is something that can be emailed, or placed in a shared social media space so that it reaches others.”
3. Check in regularly, and chat normally
“Another way to help parents affected by childhood cancer is to keep having those regular check ins with people. When people are overwhelmed with sadness, they will withdraw. And they say things like, ‘I don’t want to be a burden. Everybody knows me as that parent who lost their child,’ or ‘I know this may sound strange; I don’t want to talk about cancer every time I see people.’
It’s okay to have a cup of coffee with a parent and not talk about the cancer. Sometimes, they just want to hear what is happening in your life. It helps to bring in other topics to the conversation.”
4. Remind them it’s okay to live day by day
“We know there are a lot of long-term effects that childhood cancer and its treatment can have on survivors, but it is important for parents to know they don’t actually need to make all the lifetime decisions now. They can talk to their kids at the appropriate time when that stuff comes up.
It is common for some adult survivors to say, ‘I can’t make plans with my life anymore,’ because they have to be scanned every five years. Even though they are in remission, it’s still a stage of the cancer journey, and it can result in this condition called ‘scan-xiety.’
Sometimes making decisions is overwhelming and I like to remind people that it’s okay to deal with what’s in front of you today.”
5. Know what to say to someone trying to make sense of their experience
“We are all meaning makers, and it doesn’t make sense to us that a child could die or be diagnosed with cancer. When we struggle within ourselves to make sense of it, that’s when people around the grieving parent can offer statements like, ‘Be grateful for…’, or, ‘At least you don’t have to worry about…’, or ‘Now you can put it behind you’.
What is important to know, is that you don’t need to fix anything for the grieving parent. You don’t have to have the ‘right thing’ to say to them. You don’t have to say anything. You can just listen and sit with them in their moment. You can have a cup of tea with them and that can be more helpful to a person grieving. In a therapy setting, I often say, ‘I don’t have words for you, but I’m here for you and this is a safe space to really talk about what’s happening.’”
6. Encourage them to seek support
“It isn’t uncommon for me to hear a person say ‘Everyone was there when my child died, and then they all left. Then it was just me and my sadness.’
I tell people that’s the time to seek out support through counselling, although you can seek help at any point of the cancer journey. When everyone is there, you don’t have to do the grief work because you’re being fully supported. But then everyone will go and it’s just you and the sadness, it’s just you and the grief. That’s when the real grief work begins.
Counselling is really valuable in that it’s not a relative or your partner. At Cancer Council Queensland, we offer counselling at no cost to anyone over 18 who has been touched by cancer. Help is available, encourage your loved ones to call our 13 11 20 information and support line to get connected with support.”